[Family reactions to the vegetative state: a follow-up after 5 years]

Few studies to date have investigated the experience of family members of those who, following acute brain injury, traumatic or otherwise, find themselves in a vegetative state (VS), in particular how families cope, year after year, with care of the patient in hospital, what coping strategies are implemented to cope with everyday life, if the high levels of depression and anxiety, typical of such a difficult situation, modify as time passes, if the place of care chosen for the patient --at home or in a long-term hospital structure--influences the emotional state of the family members. This paper presents the results of a survey conducted on 30 family members of patients in VS, 25 of whom were long-term hospital inpatients and 5 home-based. Results are compared with the findings which emerged from a longitudinal study carried out on 16 family members tested in 2000 and re-evaluated, utilizing the same assessment tools, 5 years later. The results reveal a picture of significant emotional and psychophysical distress, high levels of anxiety and depression and the use mainly of situation-focused coping strategies. Family relations appear little satisfying even if over time they tend to improve. The comparison at 5 years reveals levels of anxiety, depression and emotional burnout superior to the norm and almost unchanged despite the passage of time. The comparison is slightly better for those who take part in mutual help groups under the guidance of a psychologist; these subjects tend to use coping strategies more centered on the expression of their emotions. Group therapy, when its goal is to help care givers share their own personal experience concerning the caring relationship, appears to facilitate the development of new strategies and resources to cope with daily living.